Since my last update a lot has happened to our world. I had my last face to face consultation on February 11th, there was talk of a virus in Wuhan province, the Diamond Princess cruise ship was docked in Yokohama but it all seemed unreal on the other side if the world.
For the first time since diagnosis day, my consultation was with Mrs Cruickshank, we hadn’t met since she briskly uttered squamous cancer cells, sorry better get a scope up the nose! She greeted me this time with nice to see you again you’re looking very well did you have an NG tube?So I replied yes I did, to which she replied “jolly good women do better than men in that respect”. So then down to business quick feel of my neck, no camera, just a piece of gauze around the tongue and yank. All looking excellent no reoccurrence everything looking nice and pink all healthy. See you in 10-12 weeks.
So we set off for our usual spring trip to Spain, looking forward to getting lots of cycling and walking in. Maybe the first clue should have been 2 hours from home, a text message from Brittany Ferry’s sailing delayed 24 hours due to bad weather, we carried on as hotel was booked for that night and too late to cancel. That night met up with friends Emma and Paul from Isle of Wight Paul had tonsil cancer 3 years previously, a friendship from the cancer U.K. site. Booked another night in hotel enjoyed a day in Portsmouth had coffee with Lori another head and neck patient who I met via this blog. There is a point to all this which I will address later. Then a phone call at 2000 ferry going now at 0100 so off to the port wasted a night in hotel but in scheme of things it’s only money.The crossing was pretty rough but arrived 27 February and drove straight to apartment.
Things just as we had left them. We managed a few bike rides then on 13th March we knew things were getting serious Spain went into total lockdown and over there lockdown means lockdown. Only one person out at a time and only for specific reasons supermarket chemist or bank. Luckily we have a balcony and a large sun terrace. We didn’t get out again as a couple until the 2nd of May (the day before we drove home) and that was only for an hour’s exercise, with the police patrolling the streets. During this time it had become apparent that cancer patients were beginning to struggle.
Through my blog, the cancer U.K. site and the Macmillan forum I have made many friends who today nearly 2 years on we are still in touch with, plus I made local friends via treatment in the radiotherapy waiting room which became a second home for 7 weeks.
I began to get a feeling when reading posts from new people that covid -19 was impacting on how fellow cancer patients were being treat. Not mentioning specific names but a few of us started our own self support group for a few newbies to help them in their experiences. Of course I am still maintaining activity on Cancer Uk and Macmillan sites. People really have suffered during this time, so my heart goes out to anyone reading this who have or are or just starting treatment I do hope my blog and links to others can help you.
Best advice I can give anyone is don’t be afraid the treatment is hard, the recovery can be long but it is doable. Support is out there, either on the forums,reading our blogs, sending questions only too happy to help where I can. Anyone out there don’t struggle, if pegs are not being offered due to risks associated with covid-19 there is always the NG tube, it’s not that bad, it saved my life. Painkillers; the clue is in the name, do not suffer, pain will always surprise you usually on a Friday night when you think everything’s going fine. So talk it over with your oncologist beforehand, make sure you have them either to hand or a prescription. There’s nothing worse on a Friday night than crying until Monday when you are next at hospital. Food supplements they do vary from disgusting to well disgusting, but once again get ahead, ask your dieticians for samples better to try them before you need them as the tastes do vary. Personally Ensures beat Fortisips marginally and vanilla or banana my preferences. So have some in ready for when you can no longer eat again. Get your dieticians to prescribe them.
What’s new with me? I never thought back in the early days and months of recovery that I would sit here and type these words my mouth feels almost normal. I would say there are moments in the day I would say that I have 95% saliva, nighttime I still use 1/2 an xyimelt. I regularly get 8 hours sleep wake for sips of water but not enough to disturb me. I can now eat a packet of crisps, this week I progressed to cheese and onion as well as plain! Meat is still an issue, some I can eat some I can’t , Rib eye is fine as long as it is rare. Now I can do home cooked mince again, another progress. Casseroles some days ok, pork unless it’s in sausages is too dry. Bread is ok toasted, or if a sandwich dipped into soup. Chicken is getting better, this summer I have managed to eat sweet chilli chicken thighs cooked on a b b q again progress. Chicken breast still too dry unless smothered in gravy. Most soft fruits I am fine with so that’s a big change from my last blog, most vegetables are fine, salads (particularly lettuce) are difficult it still sticks in my throat. I have tried a sip of wine and gin and tonic not ready for those. Not being a drinker before, not drinking is not a problem for me but I know plenty who can enjoy the odd tipple so don’t despair.
I started this piece with a trip to see my ENT consultant, so the above title is apt. I was due the 26th of May at Pontefract but due to covid-19 this was changed to a telephone appointment. It’s strange speaking to your ENT consultant as they can only go by what you say. This time it was Mr Gunasakharan my usual consultant, he asked about our trip to Spain. I asked how were all the staff and consultants coping, to which he thanked me for asking. As he said to me I am now in the 18-24 month period where reoccurrence is highly unlikely, but we hoped my next appointment is a face to face as it’s reassuring to hear the words from the expert it all looks clear. I did ask for a blood test for my thyroid checking this a a must for any head and neck cancer patient as at least 50% of us to on to developing thyroid issues due to radiotherapy. Its not a major problem, easily sorted by thyroxine. I went to Pontefract hospital which is a covid clean hospital, I was seen very promptly, in and out in less than 5 minutes, the hospital was very very quiet. Rung Macmillann nurse as per instructions for the results and all looking good, within normal parameters. So me being me I asked for the numbers for my records. Last year my T.S.H was a1.87 this year 1.68 acceptable levels 0.4 to 4.00 so ok at the the moment
I also want to add I was told even though I have had a telephone consultation if I had any problems to ring either the Macmillan team or his secretary we mustn’t get complacent,the consultants are trying to protect us as well as themselves ,but not at the expense of us worrying.We know our own bodies, and I wouldn’t hesitate if I needed to be seen in these difficult times.
The question I get asked the most is what do I need to be ready for treatment. This list isn’t a definitive one but it helped me with a few additions from others:
Soft toothbrushes Curaprox Amazon.
Duraphat toothpaste prescription
Humidifier Amazon cool mist approx £25
Nebuliser my hospital gave me one
Boxes and boxes of tissues.
Lip balm (non-petroleum jelly)
These are all on prescription you may be given some, all or none
Gelclair for ulcers,caphosol mouthwash, difflam throat spray,co codomol 30mg/500.if you need it oramorph or a longer lasting fetynal patch, or longer lasting m s t morphine.Don’t be scared you are using them for pain not pleasure.neck cream I was given sobrederm many use Aloe Vera gel.Always ask your team avoid anything too scented keep it simple for baths and showers.Plus all the opiates do make normal loo functions difficult so make sure one day one of treatment either movicol or laxido is prescribed.Another point if you don’t qualify for free prescription s once you have a cancer diagnosis you qualify for free prescriptions for 5 years so download or ask for the exemption form in the meantime save all chemist receipts.You will end up with a cupboard full of the various lotions potions and tablets
Above all a positive mental attitude